How Peer Mentors Change the Game for CHD Patients and Families

In this special episode ofThe 1% Heart, we highlight the power of peer mentorship and the incredible impact of theAdult Congenital Heart Association’s (ACHA) Peer Support Program. This program connects CHD patients, family members, and partners with trained mentors who truly understand the journey—because they've lived it.

Our guest isKarla Deal, the program coordinator for ACHA’sHeart to Heart Peer Support Program—and a CHD patient herself. Karla shares her personal journey withCHD, how mentorship changed her perspective, and whypeer support is so crucial for navigating lifelong CHD care.

Together, we explore:
🔹 How thepeer mentor program works and who it’s for
🔹 Thethree pillars of mentorship: Education, Self-Advocacy, and Empowerment
🔹 The impact of finding someone who truly "gets it"
🔹 What makes a great mentor and why the program needsyou

Right now, ACHA isrecruiting new peer mentors—patients and family members alike! If you’ve ever wanted togive back to the CHD community, this is your chance.Applications close on February 18th, and you can find the link in the show notes or on ACHA’s website.

💡If you don’t need a mentor, go be a mentor.

Links & Resources:📌Apply to be a mentor or request one:ACHA Peer Support Program
📌Contact Karla Deal:kdeal@achaheart.org

Disclaimer & Trigger Warning: Nothing in this episode constitutes medical advice. These are our personal experiences, opinions, and stories. This podcast contains honest discussions of medical trauma, adult language, and adult content.

Listener discretion is advised.

Heart Failure and the Transplant Process

In this episode of The 1% Heart podcast, we hear from Bailey Vincent, a congenital heart patient currently undergoing evaluation for advanced therapies due to heart failure. Born with Epstein’s Anomaly and Wolf-Parkinson-White syndrome, Bailey shares her journey through the challenges of managing a complex heart condition while balancing work, health, and personal responsibilities.

The conversation explores the importance of self-advocacy, the need for a supportive healthcare team, and the delicate balance of managing work, health, and family responsibilities. Bailey offers an honest perspective on the emotional and logistical hurdles of waiting for a potential heart transplant while also emphasizing the resilience, strength, and support found within the CHD community.

Her story serves as a potent reminder that while CHD presents lifelong challenges, it also fosters a deep sense of community and perseverance.

Disclaimer & Trigger Warning: Nothing in this episode constitutes medical advice. These are our personal experiences, opinions, and stories. This podcast contains honest discussions of medical trauma, adult language, and adult content.

Listener discretion is advised.

Navigating the relationship between CHDs and exercise

In this episode, we get to hear from a rock climber with a mechanical valve. Bob Smith, an English teacher from Colorado, takes us through his CHD journey and his experience with a mechanical aortic valve. Since his valve replacement, he's climbed Mt. Rainer, El Capitan, and a long list of other expert trails.

The conversation highlights the different activity levels of patients and how some patients push the limits of what's possible - and redefine what it means to have a CHD.

You can learn more at: www.myaorticadventure.blogspot.com

Disclaimer & Trigger Warning: Nothing in this episode constitutes medical advice. Always listen to your Doctor's advice when it comes to exercise limitations. These are our personal experiences, opinions, and stories. This podcast contains honest discussions of medical trauma, adult language, and adult content.

Listener discretion is advised.